Sunday, August 21, 2011


August 21, 2011

Six months.

Six months without Nina.

One year.

One year after the diagnosis that changed everything.

It feels like yesterday, but then a lifetime ago. 

I have spent the past six months rebuilding the remnants of a fractured life. Step by step, hour by hour, minute by minute I am constantly reminded of the beauty, strength, courage, sass and happiness of the little angel I had the privilege of loving for almost 6 glorious years. Not a single day, nor single hour passes by where I am not drawn to a memory of my precious girl. Sometimes these memories bring a smile to my face and add a spring to my step. Other times, these memories release a penetrating pain so powerful that it seems almost impossible to breathe. But just when I feel like I cannot possibly take another breath, Love comes and holds me up. Even in the midst of horror and tragedy, life still blesses us. I cling to this truth most of all!!!

To say that life has changed is an understatement. Life will never be the same. However, the pain of nursing and loving Nina to death has transformed me and my life in the deepest and most profound of ways. Gratitude, Compassion and Happiness is how Nina transformed her mama and for that I am eternally thankful!

Gratitude is how I begin and end each day. We are all living on borrowed time. I always understood that sentiment but now it is a truth that runs through my veins and that I feel with each beat of my heart. As such, I am grateful for every blessing, every smile, every tantrum, every hug, every kiss, every snotty retort, every annoyance, every bit of courage, every success...... every single bit of the entire "bowl full of cherries" or "bowl full of shit" (all depending on what is going on at that specific moment). I have learned that the "shit" is just as big a blessing as the "cherries" because it means we are here and that we have each other. Bottom line, life, in all its iterations, is a blessing and worth being grateful for! That does not mean that life is pain-free. On the contrary, it is through pain that true gratitude can be born.

Compassion is a choice I make daily, sometimes on a minute by minute basis. The pain of losing Nina has taught me that there is no room for hatefulness in life, only compassion. However, I have also learned that compassion does not mean that you sacrifice yourself to unkindness, pain or injustice. Quite the opposite. It simply means that you can simultaneously take care of yourself and choose to treat others with kindness and dignity, even in the midst of hateful behavior. 

Last, but definitely not least, Happiness, is the "Nina theme" I claim as the soundtrack to my life. Life is literally too short and too precious to not insist on building happiness, even in the smallest of ways. Nina's life was a beautiful and powerfully vibrant testament to happiness and how it is each and every one of our responsibility to make our lives count!!! Happiness is not over-rated. It is what we must strive for. We are blessed by life and therefore we are obligated to bless those around us by creating happiness!!!!!

Rebuilding is not easy! Far from it!!!! However, I am blessed by love and I am blessed by Teddy.

Teddy is doing extraordinary!!! I cannot even believe that I am able to say that, but it is the truth. If someone had told me a year ago that after the worst possible year, Teddy would be stronger, braver, and solidly happy, I would have told them that they were lying. However, Teddy is. He is the most amazing person I know!!!! This past week, he just spent 4 days with his best-friend Niels in Irvine. As I drove him down to the Dawson's  I asked him again if he wanted me to stay with him. "No mom, I can do this all myself. I've got it!" And boy did he do it! Teddy has never been away from me or his dad at the same time, and to finish his summer, after the most disastrous year a child could experience, this way is nothing short of a miracle!!!! As I write this entry, I am convinced that Nina is in Heaven giggling at all of the antics her brother, Niels and Sander got into!!!!

For the past six months I have avoided posting this final blog entry. It was too painful to think about, much less actually do! However, at the heels of the 1-year anniversary of the diagnosis and the first 6 months of life without Nina, it feels appropriate to thank everyone for their constant love and support and to remind everyone how Nina has transformed us all!!!!!!!!!!!!!!!!!! Nina leaves a tremendous legacy and it is up to us all to never forget it!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Thursday, March 24, 2011


This morning I met with Joanne Singer, one of the loveliest and tenderest people I know and a brilliant researcher and academic I have admired for well over a decade. As I was leaving her office, Joanne reminded me that thousands of people are praying for me and my family. As I walked down the stairs in the education department, the truth of her comment began to resonate with me.

By the time I had buckled myself in and drove off of USCB, tears were streaming down my cheeks. Joanne was right. She was so right!!!!

For 7 months, thousands upon thousands of people across the globe have been praying for Nina and the rest of her family. Christians, Jews, Buddhists, Muslims, Hinduists, Agnostics and even Atheists have been praying in unison. Through this process my faith has been transformed. I struggle with the heaviness I feel of being abandoned by the God I love........but truth be told (when I'm not being stubborn and allow myself to reach beyond the pain) I understand that God has never abandoned me. On the contrary, I have been blessed continuously and Joanne's words reminded me of that truth. The reality is that my faith is palatable now. It does not fit a box or a name or a creed but it is truer than prior to August 19th, 2010. My suffering has transformed my faith permanently.

Today, a Mass in Nina's memory and honor was celebrated at the Vatican. My precious Linda has been working on this gift for the past month with her dear Italian friend Elisa who lives in Rome. Below is the email that Elisa sent describing the mass. When I read this, I had just dropped off Teddy at karate. I stood outside in the rain but it was my tears that poured!

March 24 2011,S Pietro 7, 35 am 
The square is beautiful as well as the light, today is a fantastic sunny day. Very few people, just thirty-four at the security gate. The going through the main entrance is like arriving at the waited final destination. Josè is already inside, close to the sagresty where a lot of priests are changing their clots with those for celebration. Josè does the same. Our chappel is that of St Joseph altar (n46 in the map! Don't worry Nina Dolores, we're all in the same boat and I'm sure now you're really very happy within His arms. Your mom is here with me, I know it, it's night in LA but she's not sleeping, she's talking with you! Josè says you're an angel now, so we've to pray to you , not for you...anyway, I'm really happy today being here with you and for you with all the people loving you...forever

Nina's life, suffering and death has moved people to pray and strive to live better lives. That is something to rejoice about!!!

Wednesday, March 23, 2011


This past Monday was a hard day. A very, very hard day. It has been a month since we lost Nina. On my ride back from Mammoth, I was petrified with grief. All I could do was sit quietly and cry, hoping that Teddy and his buddy Niels would not notice. I did not want to panic the boys. Lucky for me, they were captivated by the majesty of the falling snow and the Ansel Adams breathtaking mountain scape surrounding us.

The beauty around us, pristine and ethereal, made my pain deeper. It made my ache for Nina soar because I longed for her to be beside me, enjoying the beauty surrounding us :(

In Portuguese there is a word that I have known since childhood but whose meaning did not penetrate my soul until I lost Nina. The word is Saudade. There isn't a direct English translation but it means a deep and voluminous longing that is marked by great sadness. 

How I long for Nina!!!

As we drove home from an incredible weekend in Mammoth, I longed to laugh with Nina, to see her play in the snow and learn to ski or snow board like her brother. I longed to hold her hand and watch snow flakes fall onto her precious button nose. I longed to hear her call out for me and she tried to put on her snow pants, frustrated that she couldn't get them fully on by herself. Most of all, I longed to kiss her beautiful face and feel her warm arms wrapped around my neck.

I longed.

I longed.

I longed.




As I write this entry, I am curled up in Nina's room, wrapped up in her comforter, surrounded by her toys, books and clothes. I recognize that she is always with me, loving her mama from afar but tears plummet as my heart silently breaks........

I long!!!

I long!!!!!!

I LONG!!!!!!!!




Wednesday, March 16, 2011

Sweet Wish

Today after school Teddy had a play date with his buddy Jake. It was blazing here in Santa Barbara and by the time I picked up the boys from school they were sweaty balls! Consequently, we went and got smoothies at Blenders in the Grass. The rest of the short play date was spent playing XBox.

Yesterday, we had a beach play date yesterday with Jake and his mom Holly. Both boys had complained after the beach that they wanted to come over and play video games. Unfortunately, there wasn't enough time then because of homework. So today....Holly and I made sure they boys had some time to hang out and play their video games :) They are both precious boys and have earned a bit of goofing off time!

After the wonderful play date with Jake, I asked Teddy if he wanted to go on a bike ride and adventure. He beamed and said yes. Practically every afternoon, Teddy and I do something fun together. It is essential that I model how life, even in the midst of tremendous heart break, continues and that we are still suppose to cultivate happiness. I take this responsibility incredibly seriously!!!

We rode our bikes to a nearby park, where Teddy immediately called a game of Tag. I maybe Teddy's mama but I still can give him a run for his money in a good old fashion game of tag :)

After tag, Teddy suggested we go on a hike to see if we could spot any wild bunnies. As we walked over to the meadow he wanted to take me to, I handed him a gorgeous dandelion I had found by the side of the road. He took the dandelion, closed his eyes and said, "I wish Nina is having a good time in Heaven!" He then puckered his perfect lips and blew the tiny white puffs away.

Teddy is spectacularly sweet and I know that Nina is smiling because she knows how much her big brother adores her!!!

Monday, March 14, 2011


I put Teddy to sleep tonight. He had an amazing day. My folks came to visit and we took him to the beach where he ran around like a mad man, chasing Molly, screaming and having a total blast.

Needless to say, he passed out fairly quickly. Although I had some work and chores to do, I just lay next to Teddy and listened to him breathing. I know it's a bit creepy but I love to hear him breathe!!! I love the sound of him inhaling and exhaling and I love seeing his chest move up and down. Most of all I love to smell his smells like Teddy!!!!! I hate that I can't hear Nina breathe anymore; it tears my soul to shreds!!!

The thing is that I videotaped Nina sleeping because I knew I would desperately miss this, but I'm not ready to watch yet!!! I just want my memories of her sleeping for now!!!

Sleep has always been beautiful to me! I have always loved watching my kids sleep. They always looked so peaceful, so angelic, so perfect (regardless of how rascally they had been during the day!). But now when I think of Nina sleeping, all I can see is her not breathing.


Teddy is doing marvelously. If someone would have told me a couple of months ago that 16 days after Nina passed away Teddy would be back in school full time, having play dates and asking to enroll in karate I would have told them they were just falsely trying to comfort me. However, the reality is that Teddy IS a MIRACLE!!!

He is back in school full time without any support from me. He is having multiple play dates a week and informed me last Monday that he wants to try new things in his life: first he wants to concentrate on sports then music :) More importantly, Teddy continues to talk about Nina. Most of the time he calmly talks about missing her and chats about favorite memories. Every once in a while he tears up and cries. I remind him that it is okay to cry and miss her. He frequently reminds me that her true self is alive in Heaven and I concur but explain that what saddens me is that I can no longer touch her body, hug her, kiss her.....and that it is OKAY to be sad, that it is normal.

Yesterday after school, Teddy had a play date with his buddy Jake. He had a great time, as always! When we got home I asked Teddy if he wanted a snack of sliced pears and he happily nodded yes. Then he asked if we could have our snack on the roof top :) Ever since Nina passed away, Teddy has loved crawling out the bedroom window and sitting on the roof top. He always asks for permission and I insist he have an adult present. I think he is looking for some way of reaching for independence, being a big boy. As long as he reaches for these opportunities safely, I'm all for it! I remember being his age and yearning for the same thing.

As we sat on the roof top, I asked if he wanted me to play some music on my iphone. He nodded happily and I put on one of his new favorites....Fireflies by Owl City. For about 30 minutes we sat on that rooftop. He chatted in between bites of pear and told me about his buddies, how he like the view from up there, how he and the cousins and Niels had tried to ambush the grownups, etc. His eyes lit up with each word he said. Periodically I couldn't resist anymore and would kiss his cheeks or nose or forehead. He didn't mind! Just smiled :)

Then he said the most magical thing ever.....he turned to me and said, " isn't whose blood you carry, it's who you love and who loves you."

He said those words so matter of factly. I was left speechless!!!

He then added that his buddy Niels was his family and how thankful he was for all his friends.

I pulled Teddy into my lap and told him he was exquisitely wise and that I adored him. He wrapped his arms around my neck and said, "I love you too mamacita!"

Roof Top Love 

Thursday, March 10, 2011


On Tuesday, Eileen and I went to visit Nina's grave at 10am. We also went Monday at 10am, a week after her funeral. I hate saying I'm visiting my daughter at the cemetery, although that is exactly what I am doing. I realize that she is in Heaven but her body, her precious body, is buried under concrete and dirt and it makes my own soul scream in agony!!!!!!!!!

As we were pulling into the cemetery, I had my iphone plugged into the stereo and a song from Madagascar 2 was playing. The song is "I like to Move It" by and it was one of Nina's favorite songs. Almost on a daily basis, her preschool would play this song during the drop off and pick up periods. More often than not, Nina would be in the middle of the preschool room dancing along with her girlfriends. She was so stunning, always smiling, sweet legs hoping along the rug, and arms rhythmically flowing through the air. As I write this, I clearly see Nina dancing in that school room.....she is so alive, so happy, so carefree and I swear I can almost touch her. But then again, it's all in my head.

All in my head is exactly what happened Tuesday morning. As I was pulling into the cemetery, Eileen was speaking to me and I got lost in listening to the song. I don't know how this happened. It was like I was in an alternate universe. My mind was not present in reality. I was in another place, another time, a time where Nina was healthy and alive. As I rounded the corner into the cemetery, my eyes saw the rows of graves to my left and my mind SHOUTED at me: YOU'RE IN THE WRONG PLACE!! YOU SHOULDN'T BE HERE!!!!!! YOU NEED TO GO PICK UP NINA AT PRESCHOOL!!!!!

I literally GASPED!!! I gasped so loud that it startled Eileen and she asked me what was wrong. I told her my mind had slipped. Like someone who suffers from PTSD, I was back in another place and time and my soul had been rocked by indescribable pain. I told her how my mind had told me to pick up Nina at preschool and to leave this horrible place. But just as quickly as that thought struck my mind, reality took over. The cold, horrible truth was that I was in the right place. I would never pick up Nina at school again. This awful place would be the only place I could ever come "visit" her.

Eileen took my hand and then rubbed my back as we parked the car near Nina's grave. I was so shocked  that I couldn't stop shaking my head.

I realize that the rest of my life will be filled with such moments. Moments where a sound, a smell, a touch will transport me to a long gone memory of my precious honey-girl. But the greatest cruelty is that reality will always kick back in and I will have to own all over again that she is gone!

Thursday, March 3, 2011

Hearing Her

It has been over a week since Nina went to Heaven. I am taking it one step at a time, stepping forward toward the blessings in my life, focused exclusively on Teddy and helping him return to life. We are living happy moments that are intermittently interrupted with extreme sadness and heartache. It is sounds strange to say that we are living happy moments but we are, truly we are. For 6 months I jammed this mantra into Teddy's head but in fact what I was doing was pressing into my own soul!!!

Nina was sunshine in my life, in all our lives. Therefore, we must press forward with the same gusto that she had and seize sunshine wherever we can. It is not easy!!!! That doesn't even begin to describe the internal battle I am constantly waging!!

In the beginning I was worried I would crumble and that this journey would leave me an animal I did not even recognize. I did not crumble but I have been transformed. I am no longer the woman that I was on August 18th. I was consumed by this journey, by protecting my children, and I am a different person all together. I am no longer shackled by fear, no longer trapped by worry. I am now acutely aware of how precious life is and am determined to help the children in my life (Teddy, Sosie, Addie, Silas, Teague....) learn to recognize this and live life to the fullest!!!

Teddy has returned to school. I have been systematically attending school with him each day this week, adding a bit of time each day and fading myself slowly. Everyone at his school has been magnificent and willing to have me slowly reintroduce him to the safety and stability that school. He has not shed a tear about going to school. I told him life is now about communicating. That he needs to communicate to me what he needs and that I will help him. As I write this, he is sitting at the front of the class, happily participating in a math lesson, whispering into his buddy Will's ear when the teacher is not looking his way. This fills me with the utmost gratitude and happiness.

And in the middle of all of this.....I still hear Nina.

As I showered this morning, I swear I heard her squawking for me. I actually looked up toward the bathroom door to see if she was really calling. Then reality hit. She will never call for me again.

As I walked Teddy to his classroom, I saw the spot Nina would love to sit at and wait for me to return during morning drop off. I heard her say, "Mama I'm too tired to walk. I'm a gonna wait here. Promise!"

I hear her every where. But then again, I don't :(

Day 188: A Boy After God's Own Heart

Eleven years ago I participated in a Bible study that was entitled: David, A Man After God's Own Heart

Today, I lived an even greater story with my very own son.

Today, the study I lived was entitled: Teddy, A Boy After God's Own Heart!

For 6 months I ached for the pain Teddy was going to suffer. I thought and planned and tried to diligently work in preparing him. It never felt like enough!!!!!! I would do anything to take this pain away from Teddy!!! He is my sacred treasure, my first born, my first love, my lovebug, my peanut, my precious son!!!
His greatest fear was that one of us would die and now his fear was going to become reality. This made me cry just as deeply as the pain and suffering Nina went through.

From the moment I recognized Teddy's anxiety, I have worried and toiled to help him develop adaptive skills. Too many people around me are crippled by anxiety and I was determined to help my son. What worth did my Ph.D. have if I did not pour everything into helping Teddy. For years and years Teddy has worked hard to overcome his anxiety. Family and friends, especially school teachers, cannot believe that he is the same little boy. He is so strong now and his strength never shone so brightly as today!!!!!

After the kids had breakfast, I asked Todd if he wanted to stay with Nina or take the boys with Robert and Joe to the beach. I felt like the boys needed to be able to run around and process their grief in a child-centered way. Todd decided to take the boys. They were gone for almost a couple of hours. When they returned, they came into the living room. I was sitting next to Nina. Teddy came and plopped himself on my lap. We had the Tinkerbell soundtrack on and I watched him look over to the cd player when her favorite song came on. I was rubbing Nina's arm. I didn't urge him to touch her, just kissed him and asked what they had done. Slowly, he moved closer to her and then started to touch her hand with his index finger. He just quietly tickled the top of her hand, then moved to tickling her pointer finger. Before I knew it, he was holding her hand. His eyes were glued to her, as if he was trying to make sure she was really gone and not just sleeping. He leaned his head into the crook of my neck, like so many other times, but never like this!!! I whispered in his ear that Nina was now his angel and that she was right there beside him, loving him, so happy he was loving her. Tears came to his eyes and he asked if we could go outside.

We went outside and were immediately joined by Silas and Niels. We walked over the Lauers and sat in their living room. I asked the boys how they were feeling. Silas and Niels said they were sad and Teddy just tucked himself into my lap. We talked about how it was okay to be sad and to cry. That it was normal to do so. But I also reassured them that it was okay to be happy and laugh and to smile about all the wonderful memories we had of Nina. Silas shared his favorite story about her snorting. Teddy sat quietly and declined having lunch. After a while, we turned on the tv so the boys could eat and hang out. Teddy whispered in my ear that he wanted to go to his room and cuddle.

We left the boys and went upstairs. As we climbed up the stairs, he looked behind him at Nina. Tears started falling out. By the time we reached his room he was sobbing!!!!! He crashed onto his bed and started wailing, "Not my sister!! Not my little sister!!!!! Who is going to be my sister now??? I don't want to be an only child!!!!! Oh my God!!!!! Who is going to get me in trouble and take time outs with me???? I don't want Nina to be dead!!!! I want her to live!!! There are so many things I want to do with her!!! She is so little!!!!!! Who is going to be my sister!"

He literally flayed across his bed, intermittently crawling into my lap for comfort. I just let him talk, rubbed his back and when he would calm down for a bit, I would tell him how much we loved him, how much Nina loved him and that she was never going to really leave him, that she was his angel forever and right by his side for the rest of his life. "But I don't want her to be my angel, I want her to be next to me. Who am I going to cuddle with when I watch a movie?" I tried to comfort him, that we would cuddle with him, that his cousins and friends would be with him, and most importantly that even though he couldn't see or touch or hear Nina that she was right by his side.

His face was red, covered in tears. The only thing his precious beautiful face said was PAIN!!!!! He was living the pain of Nina's death just like the rest of us!!! I would have given my life to take away that pain from him!!! I just held and kissed him, over and over again. There is nothing worse, even Nina's pain, than the torture of watching your child grieve excruciating heartbreak. I firmly believe that we have lived through HELL on all levels, with both Nina and Teddy!!!

Eventually he calmed down and asked, "Can we just cuddle and watch a movie?" He didn't want to play with his cousins or friends. He was sad and didn't want to go outside and have fun. I reassured him that was a great plan and that it was okay to be sad, to cry, to scream, to shout. I told him I had been doing it all day and that we would continue to do it together. "Can Nina cuddle with us too?" he asked with the most innocent face. "Of course honey! She is right here and she is so happy that you talked about feeling sad and now want to do something fun! She is proud of you just like she always is!!!" I explained, kissing those perfect cheeks over and over, so glad that for once he wasn't wiping them away!

Todd came in at that point and Teddy started sobbing again. His grief was palatable, so thick it filled his bedroom, almost making it hard to breathe! He cried in his dad's arms and Todd loved him, reassuring him that Nina was always with him.

Teddy ended up deciding that he wanted to cuddle and watch Suite Life of Zack and Cody with Todd. He asked for goldfish crackers and the two of them climbed up onto the top bunk. My feelings weren't hurt. Teddy had been longing to spend more time with his dad for a very long time and he needed to feel secure with his father. I left the two of them together and they hung out for about 1.5 hours.

After a while, I returned and Teddy was ready for some mama time. As I climbed up the bunk bed, Teddy told me he wanted more goldfish, then he looked to his right and said, "Is that okay Nina?" I smiled as I looked at him and he explained, "Nina is right here with me. I can't see her but she's here." "You're right buddy! She's with you all the time, never forget." I kissed him and then went out for my goldfish run.

As I was climbing back up the stairs I ran into Todd and asked how Teddy had done and he said well, that he had asked a lot of questions about getting to see Nina again, what she was doing in Heaven, who was taking care of her, if he could talk to her, etc. I asked how the beach hike had gone and Todd got chocked up as he pulled out his iphone and showed me the following photo. He explained that as they were walking through Campus Pointe, he noticed that Teddy was walking with his arm slightly extended out and his right hand cupped. When he asked Teddy what he was doing, Teddy told him he was holding Nina's hand. I was left breathless!!! This most tender little boy has the heart of a wise old man. He is astounding, he is exquisite, he is amazing, he is a MIRACLE!!!!!

I cuddled with Teddy for a while and then asked him if he was ready for Silas and Niels to come up and play with him. The boys had been asking when they could see Teddy repeatedly. They were worried about him, sad for themselves, but especially sad for their best buddy. Teddy nodded that they could come up. The boys were elated and the three of them played for the rest of the afternoon. Periodically, I would go sit next to Teddy, feed him bites of banana and chips (if ever there was a time to spoil him....), rub his back, kiss his head, anything that would reassure him that I loved him, that his family adored him, and that we would always be here for him. Teddy was so affectionate, constantly tucking his head on my lap, nuzzling, and never once balking about my kisses. He needed loved poured on him and that is exactly what we all did!!!

After I returned from the funeral home later that evening, I found Teddy and Todd alone in our bedroom watching the Suite Life of Zack and Cody and eating the Habit. I cuddled next to Teddy and asked how his burger was and he said, "Tasty!" We munched on fries and watched the remainder of that episode. When the next one started, Teddy asked if I could leave, that he wanted to have alone time with Todd. I kissed him and said I was glad to do so. I knew that he wasn't trying to be exclusive or retreat away from me. Fact of the matter was that Teddy spent the majority of his time with me, that we did activities together all the time. More importantly, Teddy missed spending time with his dad, and today he had suffered the biggest loss of his life. Even though he loves me dearly, he is a little boy and little boys crave time with their fathers. I was glad that they were spending time together.

Not long after I left, Teddy came to find me and invited me to return. He gave me the biggest hug and I told him that he could just have alone time with dad, that it didn't hurt my feelings. He insisted I join him and so I did. In the past, I have found myself complaining about watching the same episodes of his favorite television shows. Tonight, I was thankful for something familiar, something normal, something constant. After a few more minutes, Teddy asked Todd to get him more goldfish :) The boy was the goldfish king! As Todd ran his errand, Teddy and I talked about how Nina love Zac and Cody, remembering our favorite stories and memories of Nina. Out of the blue, Teddy turned to me and said, "Mama, Nina isn't really dead. Her body is dead but her true self is alive, it lives forever!" I was speechless!!! All I could do for a few seconds was hug him and kiss him. Then I cupped his precious face with my hands and told him he was the most incredible and wise person I knew, that he was my hero!!!! Teddy beamed!!! I explained to Teddy that God had given him the heart of a warrior, that his capacity to love and understand was beyond comprehension and a flat out miracle!!!! Teddy just nuzzled into my arms and loved me in return.

Todd returned with goldfish and the three of us hung out. After a few more episodes, Teddy and I cuddled. He fell asleep in my arms. I don't remember falling asleep myself but I do remember that for the first time in a very long time I reached out to God in happiness and thanked him for the Miracle of Teddy!!!!

Thursday, February 24, 2011

Day 188: Sacred Moments

Monday February 21, 2011

I don't know why I did CPR on Nina. It just seemed like the thing to do. With each breath I blew into her precious mouth, I told her I loved her. After a couple of breaths it dawned on me to check her pulse. I could feel a slight heart beat. Todd was calling our families telling them to come asap. I had already texted our friends and told them to join us. Todd came back into the house and I vividly remember seeing the deepest most agonizing pain written across his face. Tears were cascading and he covered his mouth to muffle the gasps that were pouring out. I felt my own heart race, like nothing I had ever felt before.

I must have breathed into Nina about 12 times. I listened for her heart and felt nothing. As soon as Nina exhaled her last breath, I told Todd to come sit with me and talk to Nina. I told her that we loved her, that we adored her, thanked her for being a ray of sunshine in our lives. I reminded her how grateful we were to be her parents, how much Teddy adored her, how her grandparents and cousins loved her to pieces, and how we would all miss her terribly. Todd also told her that mama and dada loved her so much and were so proud of her. I kept kissing her precious mouth and face. I must have covered every inch of her beautiful face in kisses. The last thing I said to her before sitting up was that I was so proud of her, that she had been the bravest and strongest person I would ever know and that now she didn't have to be sad anymore, be in pain anymore, she could just be happy in Heaven and be our angel forever. I remember (as if I were doing it right now) that I kissed her lips and held mine on hers for extra long, trying to memorize the warmth of her precious mouth on mine.

For almost 6 years I have kissed those prefect cherub lips. Up until August 19th I had taken it for granted that I might not always have the privilege of doing so. At the very moment of her death I discovered how truly sacred Nina was, how the very warmth of her body was a miracle. The very atoms that comprised Nina's lips were a miracle!!! I kept my lips on Nina's because I wanted to forever sear into my mind the sensation of Nina's warm lips on mine. I wanted to do this desperately because I knew the coldness I had prayed against for so long would soon take over!

Todd kissed Nina and I reached for his hand. We hugged her together, knowing all to well that it would be the last time we would get to hug our warm Nina.

Our angel on earth was now our Angel in Heaven.

Tears fell from my eyes, but I recall that they were not tears of sadness. They were tears of relief and longing. They were tears of relief because Nina was no longer suffering. They were tears of longing because I now knew for real how much I was going to miss Nina. For 6 months I had speculated about this moment and what I would feel. I had thought about it over and over again, but it had never been REAL. Now it was REAL!!!

At this moment, Dan Brennan walked in and sat next to us. I asked him to check to see if her heart was beating. He checked her pulse then said he needed to go to his car and get his stethoscope. When he returned, he confirmed what we suspected. Her heart was no longer beating. Todd walked outside no longer able to contain himself. Dan walked into the bathroom. I sat alone, caressing Nina's face and hold her precious hands. My mind went blank for a split second.

For months I had pained and toiled about how we would handle this situation with the kids. All along I had thought that if we had to lose Nina we would try to have her die at the hospital instead of at home. Personally I had wanted to keep her at home but I wasn't sure that would be the best thing for Teddy. Just two weeks ago Todd and I had made plans to keep Nina at home as long as possible once we started sedation and then when she was no longer conscious take her to the hospital. I had made contingency plan after contingency plan but never had it crossed my mind that we would lose her so quickly and be unprepared. The kids were all upstairs asleep. I had heard Joe, Silas and Teague use the bathroom a while earlier but Teddy, Adelae and Sosie were fast asleep in our bedroom.

Todd came back in and I told him we needed to wake up the kids and tell them we needed to take Nina to the hospital and that they needed to say goodbye, that they loved her, and give her a hug if they wanted. I asked him if we wanted to go get the kids or stay with Nina. He opted to stay with Nina. I asked Dan if he could figure out if we could take Nina to the hospital and he squeezed my hand before saying yes and walking outdoor.

Teague. I explained that they needed to finish getting dressed and to please stay in the bedroom until I returned with the rest of the kids. We were going to have a quick family meeting.

I then went into our bedroom and woke up Teddy, Adelae and Sosie. I told them I needed them to quickly go potty and get dressed. Teddy asked, "What's going on?" I sat next to him, holding his hand and explained that dad and I needed to take Nina to the hospital and that we needed him and the cousins to say goodbye and remind her how much they loved her. I will never forget how his perfect most precious face went pale when he asked, "Are things bad now mama?" I don't know how I didn't vomit right there and then, but by the grace of God I didn't. My heart shattered all over again, a millions times over and over again!!!!! This was so cruel!!!! Teddy and these kids should not be going through this!!!!!! This was beyond unfair. It was torturous!!!!!!! I pulled Teddy into my arms and hugged like I had never hugged him before. I took his face in between my hands and told him I really needed him to be brave, now more than ever. He buried his face into my neck and sobbed, "I don't want my sister to die!" If I could have torn through Heaven and given my life in exchange for Nina's I would have. I would have thrown myself before the Maker of Heaven and Earth and begged for mercy beyond mercy!!!!!!! But the Maker had chosen to not listen. He had chosen to take our angel instead and now I was left with the destruction before me!!!!!!!!!!! Why had He abandoned us????????????????????????????????

Instantly Sosie knew what had happened. She went pale, tears welling in her eyes. I helped Teddy get dressed and the girls finished quickly as well. We then all piled into Teddy's bedroom where I explained what was going on. I told the kids we all needed to be brave and remember all the good times we had with Nina, what a gift from God she was to us all. I then told them we needed to go downstairs and tell her goodbye and that we loved her and that if they wanted to give her a hug. I then added that after they were done we needed to meet outside and group up so we could go get breakfast.

I went downstairs and asked Todd if he was ready. He was kissing Nina's head and I knew what he was doing, trying to memorize her smell. He said he was, so I climbed up the stairs and asked the kids to come down. I took Teddy by the hand and walked him to Nina's side. I sat down next to Nina's right side (Todd was on her left) and had Teddy sit on my lap. What transpired over the next number of minutes will remain one of the most sacred moments of my life. From my lap, Teddy reached over and hugged his baby sister and whispered, "I love you Nina, I am going to miss you." When he looked at me, his eyes were blood shot, deepened by an unimaginable sadness. Silas was next, he hugged her tightly and told her he loved her. I had him and Teddy sit on the chair directly behind me. Teague walked up and paused. Todd tried to speak, but his voice caught before he was able to say, "It's okay can come up and hug her." As Teague approached Nina, Sosie starting balling, followed by Adelae. Little Teague embraced Nina and then stopped when he pulled back, looking at her as if he was trying to convince himself that was really his Nina, the same Nina he had loved and played with since he was one month old (Teague and Nina were only a month apart in age). Both Sosie and Adelae came to Nina's side simultaneously. Sosie wrapped herself around Nina's neck and kissed her cheeks before releasing the sweetest and most pained sigh I have ever heard and God willing will ever hear. At first, Addie quietly stroked Nina's arm, trying to command herself to manage the pain. She then leaned forward and hugged Nina and in the tiniest of whispers said, "I love you Nina!"

For months I had ached about how to prepare and support the kids for this very moment in time. Never had I imagined it would turn out like this but as I sat there next to our precious honey-girl, cuddly on her bed, surrounded by her brother and beloved cousins, I knew that we had been blessed. My plans were just that...... plans. Nina had died peacefully in her own home in her bed and was now surrounded by the children who cherished her most. Even though I felt abandoned, God had provided and the provision was perfect.

I asked Joe to have the kids follow me outside. I ran out to find Eileen and Mario and ask them to get the cars ready to take the kids to Anna's Bakery. As I walked out, I saw Yvonne and Sander running in. Yvonne looked panic-stricken, tears running down her face. Again, since this day I have apologized to everyone I commandeered but I think that if ever I deserved an all encompassing hall-pass, Monday was the day!!!!! I leaped toward Yvonne and demanded that she STOP. In a forceful tone, I told her to calm down; that we needed to proceed with care and caution with the kids. "Is she dead?" Yvonne asked. Yvonne had loved my children since birth. She and I have cared for each other's children as if they were our own. The haunted look in her eyes reminded me that the adrenaline rushing through my veins was poisoned, that my baby girl was indeed gone, dead. Nina was dead. I had known for 6 months that we were walking down this awful path but now it was real. How could my honey-girl be dead? I had just kissed her a couple of hours ago. Now she was gone.

I had Yvonne and the family follow me into the porch. Joe and the kids were already waiting. Dan came out and told Eileen that we couldn't take Nina to the hospital, that the protocol was to call the funeral home. I asked that he find out if Todd wanted to join us on the porch or stay with Nina. From indoors, Todd said he wanted to stay with Nina. I knew what I needed to do. I leaned up against the condo wall, the same wall Nina had painted with sidewalk chalk, the same wall she had leaned her bike on, the same wall she had she had counted for hide-n-seek so many times, and told every one to gather around. I thanked the kids for being so brave and loving to Nina and explained that even though our hearts were broken and we were sad, we needed to be thankful for all the time and fun we had with Nina during the past 6 years, that she was a precious gift from Heaven and that she was now and forever our Angel. I asked the kids to gather in so we could pray. I closed my eyes and prayed:

"Heavenly Father, We stand here heart broken. Nina has been a treasure in our lives.
 We love and adore her and even though we are so sad, we are thankful for all the 
ways in which she was our gift. Please help us be strong. Help us remember
how special we are to one another and help us to feel love. 
In Jesus' name we pray. Amen."

I then told the kids how proud I was of them and reminded them how much Nina loved each and every one of them, how they had made her so happy and loved her so well. Then, I explained that they should all go the Anna's Bakery shopping center and have breakfast. Immediately, Teddy shook his head no. I asked him if he wanted to go and he hung his head low, whispering "No." Sosie immediately chimed in as well as said that she didn't want. I looked at Addie who was pleading without a word to stay. I asked all the kids if they wanted to go or stay and practically in unison they said they wanted to stay. We were a family that had lost the greatest loss and I understood why they wanted to stay. I wanted to shield them from pain but it was no longer possible. This pain was theirs. It was realer than I could have ever mentally prepared myself for. They owned it and would wear it forever just like I would, so it made perfect sense that they wanted to remain intact as a family in the middle of the storm.

I delegated breakfast and taking the kids to our neighbors place. The Lauers were out of town and had offered their place for our family to use. It was now our safe haven! I took the kids inside and sat next to Teddy. Immediately he started to cry quietly. Silas sat next to him, tears in his eyes as well. "Mom, is Nina okay now?" I kissed him and said that she was in Heaven and that she was more than okay, that she was perfect, that she was his angel. He buried his face into my chest. We talked for a little while before Teddy told me he didn't want to talk anymore. I asked him if they wanted to watch some tv and they said yes. Niels joined the boys on the couch and we flipped through the channels until we found Underdog. Joe came into the house and I asked him if he could sit with the boys so I could go check on Todd and Nina.

The courage and love exhibited by these kids in the face of death was breathtaking. I had worried and worried but now everything was sacred. They had loved Nina in life and now were loving her with even greater depth. I was so thankful!!! I was so humbled!!!

The remainder of the day was filled with continuous sacred moments.

Our friends and Todd's parent's arrived shortly after we took the kids to the Lauers and poured their love into Nina one last time. As I walked into our condo and found my dearest friends (Eileen, Sharon, Crystal, Larisa, Katie, Mi Na) huddled around Nina, quietly crying and kissing her, my heart burst with unyielding gratitude. Nina had spent the last moments of her precious life in her home, not tied up to machines and cords in a cold hospital room. We didn't have to make the decision about when to snow her with extra medication so she wouldn't know she was going to the hospital. People didn't have to come say goodbye in an unfamiliar room. Instead, everyone got to return to the place (the living room mattress) that had been Nina's headquarters for 6 months. From that spot, she had commandeered an entire battalion of people who loved her. From that spot, she had kicked our butts in Wii. From that spot, she had laughed her gorgeous and infectious giggle. From that spot, she had yelled at me "Bad mama!". From that spot, she had fallen over from laughing at her brother's antics. From that spot, she smacked us over and over again. It was perfect, albeit painful beyond explanation, that from that spot Nina had gone to Heaven.

Our family and friends had carried us through this journey and throughout this day they continued to do so.

I asked Todd if he wanted me or him to take the boys to the beach. They needed to get out and run around. The girls wanted to stay. I understood. Todd said he, Robert and Joe could take the boys for a hike. I was glad. Sitting around was not how the boys needed to spend their day. They needed a boy-kind of way to process their grief. What was better than running around on the beach?!?!?

My friends and the girls (Sosie and Adelae) helped me bathe and dress Nina. I wanted her to look beautiful, the way she always liked to be. Just a few days ago (last Tuesday) we had gone shopping at Gap Kids with Todd and Yvonne where Nina had picked two new dresses and a beautiful pair of shoes.  We dressed her in her beautiful blue flowered, spaghetti strapped dress. All I can say is that Nina looked peaceful, radiant, with the most beautifully angelic smile on her face. As we bathed her, I kissed her over and over again. I leaned in extra close to her head and tried to memorize her smell. Her stinky head. How I loved her stinky head!!!!

As the boys and daddies went to play and hike at the beach, our friends all gathered around Nina. Sosie and Addie sat on either of her side, stroking her little arms, that were now getting colder by the hour. We sat around and shared our favorite memories of Nina. We cried and we mostly laughed as we remembered the spunky ray of sunshine that was our Nina. My heart and soul wept like the crashing Niagara Falls but I also felt great peace and love. Nina had brought us infinite love but SHE was also well loved!!!!!!!!! The room full of people that very moment reminded me of that!!!!

The remainder of the day was filled with such sacred moments. Everyone who had supported us through this journey had an opportunity to love on Nina, in her own home. Todd's parents came before the guys and boys left for the beach. Gordy's weeping filled the condo and he assured Todd and I that Nina was in Heaven that very moment. The Brennans, the Marbans, the Vineals, Holly, and the Becchios all wept as they kissed Nina one last time.

At one point, before they left for the beach, Teague and Sander came in with Yvonne. They boys had written a story about Nina that they wanted to read to me and Nina. I had then huddle around me as I read, telling them that Nina could hear their beautiful words from Heaven.

Nina died when she was six years old.
We all loved her.
And we will always carry her in our hearts.
Even though Nina died and she'll never come back,
even though she want to. And now Jesus is carrying
her in her heart. She was our very best friend.
I loved her. 
She was very special to us.

Sander & Teague

All day, the kids roamed around the house, occasionally sitting next to Nina. Death had become a new found reality to them because of their precious sister, cousin and friend. However the reality was not a grim, hysterical or scary one. It was sad, so sad, filled with longing and pain but it was also calm and peaceful. The kids will grow up with a profound sense of the preciousness of life and a security in that life does not end on Earth but continues forever in Heaven. Am I devastated that it was my honey-girl who had to teach them this, absolutely. But as I have been telling Teddy for months, actually his entire life, there are only two options in life: be destroyed by the negative things in life or own the pain but then  grateful for the blessing in life and step toward happiness. Today, that mantra I had been stamping into his head and my own had become REAL!!!!

Before my parents and brother and Michelle arrived, Nina had a potty accident. I had Linda clear the house so we (my friends, Sosie and Addie) could re bathe Nina and get her settled again. By now her sweet body was completely cold and bruises (red spots) had begun to appear across her legs, back and bottom where all the blood was settling. I turned on the Tinkerbell soundtrack, her favorite and asked the girls to lift her onto my lap after we took off her dress. We pulled her dress off and I commented how perfectly Nina it was that she had picked two new dresses. I then sat on the couch as Linda and Eileen put her in my arms. An overwhelming flood of pain and heartache took over me right then and there. I asked them all to leave and give me a few moments alone with my daughter. I held her there, naked in my arms, just like I had the very moment she had been born. I rocked her back and forth, kissing her sweet face, calling out to her "Sweet baby girl!" just as I had the moment she had been born almost 6 years ago. I thanked her for being my darling daughter, the ray of sunshine that had filled me with such love. I told her over and over again how much I loved her, how sorry I was for all the times I had lost my temper with her and not played enough with her, I told her I would miss her every second of my life on this earth but that I promised I would see her again and that I couldn't wait to hear about all of her new adventures. I cried and cried, rocking the lifeless body of my angel in my arms. This was the cruelest day of my life, but there was still peace. My most precious daughter was no longer suffering and that was the first thing I had worried about back on August 19th!!!!!

Eventually, I called the girls back in. I couldn't stop kissing Nina, especially her lips. We bathed her, I cleaned her little nose out with q-tips one last time, and then I had us all take turns rubbing Kiehl's lotion on her perfect body. Once we got her dressed, Addie combed her hair one last time and Sosie put her make-up on again one last time. Nina was surrounded by the group of women who had loved and nurtured her through her greatest battle. I held her curled hand and sobbed as I thanked them all for the profound love they had poured into me and I explained that although for a very long time I felt abandoned by God, I knew He had never left my side, each and every one of them was evidence that God loved me. I then turned to the girls and proclaimed my never ending love for them. I promised that I would spend the rest of my life supporting and loving them, that they had carried Nina and me like no one else, that their capacity for love and grace reached beyond understanding and I apologized for all the time-outs I had given them over years and all the times I had lost my patience and I promised to guard their hearts forever, just like I had promised Nina 6 years ago when she took her first breath.

Sosie and Adelae blew my mind this day! The only other person that surpassed them was Teddy!!! I am forever changed because of these children!!!

When my parents arrived my grief came crashing again. The 5 of us hugged in the kitchen, my mother begging the question why and my father fervently telling me how much he loved me. For an hour we all sat around Nina, sobbing. I held my mother and rocked her as cried out in pain, the pain of a grandmother and mother. Nina's journey on this earth was complete and now with her Vovo, Vava, Uncle Bruno, Auntie Michelle and baby cousin surrounding her, her passing was whole. I turned to Bruno and Michelle and reminded them how the only person Nina had kissed at her party (when they were leaving) was the baby!! As everyone said goodbye, Nina didn't want kisses, but she reached for Michelle and the baby and gave the baby belly the most beautiful kiss!!!! We sobbed as we remembered how much Nina had loved that baby boy and I told them that she would be his angel all the days of his life!!!

Eventually, the funeral home called. They explained that there was no room in the car for any adults to ride with Nina but that we were welcome to follow them. This was NOT an option. Instead, I informed them we would bring Nina to them. There was no way in hell my baby was going to leave her house without us. We all gathered around Nina and said one very last goodbye. Then, Todd, Elieen, Sharon, my mom and I lifted her into her favorite Hannah Montana blanket and wrapped her up tightly. Earlier we had asked Teddy if he wanted to come. Everything was now about following his lead. He had declined and had asked that I take Nina and Todd stay with him.

Todd carried Nina out of our home and placed her into my lap. We all cried!!!!! From our bedroom window, I saw Teddy's shadow, his pointy-dointy sticking up. He watched the entire thing from the dark upstairs bedroom. I called Todd and told him to go ask Teddy if he wanted to say goodbye one last time. Earlier, he had declined. This time, he did. Todd carried him downstairs to the car, where he climbed across me and hugged his little sister for the last time. Tears fell as he told her "I love you Nina!" and lay his head on her chest for the final time. I kissed his perfect lips and told him I loved him beyond measure and that I would be back soon. Todd carried him back into the house.

Inside the Pilot, Bruno drove and Michelle sat in the front passenger seat. Nina sat in my lap, with my mom to her left and Eileen to her right. My dad sat in the back row. As we pulled out of my complex, we all sobbed. There are no words, in any language, to describe the pain we all felt. It was searing and turned our souls inside out.

As we drove, I kissed her and talked to her. I grabbed my iphone and created a play list with her favorite songs. We drove all the way to the funeral home, sobbing and singing to Taio Cruz and Usher. Nina had lived life with gusto and vibrancy. Her ride to the funeral home, albeit marked by unearthly heartbreak, would be no different!!! I was determined about that!!!!!!

Once we got to the funeral home, Scott (the funeral home director) met us out back. Eileen opened the door and I stepped out, carrying Nina alone!!!!!! I had brought her into this world, with excruciating pain and suffering. I alone would carry her into this sad place, with the greatest pain and suffering of all!!!!!!

I followed Scott through hallways until we came to a back room. He tried to help me but I snapped and said I could do it. Nina weighed 70 pounds and felt even heavier but she could have weighed 200 pounds and I still would have carried her in!!!! No one would ever know the weight of the pain I had carried since August 19th and would carry for the rest of my life.

I carefully lay her on velvet gurney. I kissed her entire face, her hands and precious feet. We all kissed her goodbye and I instructed Scott to take care of her and that we would bring new clothes and shoes tomorrow. As we walked out, I felt the pain wrap itself around my neck. I turned to my brother and said I needed a moment and started to run. I ran into the darkness and before I turned the corner I screamed the loudest, most painful scream any one in Santa Barbara has probably ever heard and God willing will ever hear again!!!! My scream tore through the Heavens, that I am sure of!!!!!!! It was a scream that surpassed all screams, and echoed across this awful world. I ran and ran and ran. If God had not known my pain He knew it for sure now!!!! As I ran, I saw Our Lady of Sorrows Catholic Church on the left hand corner. I ran to front doors and tried to open them. Closed!!!! Of course they were closed. In my greatest sorrow, the doors to church were closed!! Perfect!!!!!!!

I ran across the street and tore through the green fields of Kid's World park. Fitting that I was there. All along I heard footsteps behind me. Eventually, the footsteps gained on my and a pair of strong arms wrapped themselves around me. They were my father's arms. He grabbed me and held me, sobbing, telling me he loved me, longing to take my pain away, reminding me of the Grace God above was pouring into me, telling me what a glorious and mighty mother was I, how valiant and brave and courageous I had been all these months and how I needed to press forward because Teddy was waiting for me at home. He hugged me, never letting go, as we walked to my mom, reaching her before she collapsed to the ground. Within a couple of minutes (Bruno had hopped into the car with Eileen and Michelle and followed us) Bruno had run toward us too. The four of us hugged and cried in the empty darkness of that park. My parents had come to this country to give us the best life possible and now, 37 years later, we held each other in the greatest suffering known to mankind.

As we calmed down and walked back to the car, I thought of a conversation I had a few weeks earlier with my friend Katie Levinger. She had told me that the pastor at their church had given a sermon about the original Hebrew meaning of the word "blessing". She explained that it wasn't what we thought of as the meaning of blessing today in modern times, that is a good thing. In fact, the original meaning was the complete opposite. It meant to be consecrated by God through great suffering. It was fitting that my entire life mantra, as long as I could remember, had been to suck up my sorrow and step toward blessing with a grateful heart. As I walked hand in hand with my parents and brother in the cold dark night, I felt so abandoned by God...... but the fact.....the truth......was that I was BLESSED!

Monday, February 21, 2011

Day 188: Our Angel In Heaven

Monday February 21, 2011

Yesterday we celebrated Nina's birthday, surrounded by our family and friends. When Nina woke up at 11am, her face beamed. Eileen and I had decorated the entire house a la Sponge Bob. There were streamers, balloons, wall decorations galore. She opened her eyes and looked at me (I was atop the ladder) and said, "Oh Mama, thank you so much!! It's beautiful!!" I jumped to her side and kissed her sweet mouth. She asked me to help her sit up. Then she pulled me in for the biggest smooch ever! It was perfection, covered in love!!! Then she said, "Mama aren't you so proud of me for waking up in a great mood and being happy? Do I get all of my stars?" I giggled with delight as I kissed her mouth again and told her she got all the stars in the world.

Nina had the most beautiful birthday party ever! She was surrounded by every one who loved her dearly!! When we sang Happy Birthday to Nina it was the most sacred moment. Nina lay on her living room bed, surrounded by 40 people who loved and cherished her. She was in perfect Nina form. Hollered that we were too loud when we were singing so we softened our voices. She beamed when she blew out the candles! She even tried to smack the cake. Best of all, she demanded the biggest slice of cake ever!!!!!!

In the afternoon her breathing became very labored and difficult. We gave her more medicine to try to calm her down and help her rest. Before her breathing became even worse, she demanded and took a bite of her cake. Eventually we got panicked enough that we called Dan Brennan to come over. He helped us suction all the extra secretions she had and showed us how to lay her down in a way that would help keep her airway optimally opened.

After Dan left, Todd and I each lay beside Nina. We cuddled with her and all three of us fell asleep. About an hour later I woke up. Teddy asked that I sleep with him so I did. All night long, Todd and I kept vigil. Although her breathing was labored, Nina slept throughout the night peacefully!! I checked on her at 8:30 and she was breathing. Todd was asleep on the couch. I check on her at 9:10 and she was breathing. I kissed her and went into her bedroom to work on the blog. At 9:30 Todd raced in and said that she wasn't breathing. I raced to her side and started CPR. I don't know why. I just felt I like needed to do something. I breathed into her precious mouth about a dozen times. She took several breaths then I could no longer hear her heart beat. I called Todd over and told him we needed to hold her. I caressed her face over and over again, kissing every inch of her face and told her how much mama and dada loved her, how everyone loved her, how she was the greatest gift from heaven, our angel. Todd and I cried, he kissed her and told her also how much we loved her. I kissed her lips and told her our hearts belonged to her and that we would never ever stop loving her and that we would miss her terribly but someday, I promised, we would see her again in Heaven!!!

Todd and I then texted everyone that she had stopped breathing. Around 10am, Dan arrived and confirmed that her heart had stopped.

Our sweet angel was in Heaven!!!!!!

Nina was our angel on Earth and she is now and forever our Angel in Heaven!!!!

We loved you from the moment you we knew you existed, we loved you even more the first moments we held you, and we love you the most now and forever!!!!

Day 185

Friday February 18, 2011

Teddy had the day off from school and slept in. I can see the growing sorrow in his eyes. On a daily basis he asks, "Are things bad?" I keep hoping that I wake up from this nightmare to find them both sleeping together on the bottom bunk. So much has changed since August 19th. Six months does not really sound like that long but my life has been turned upside down and tossed around so many times I've lost count. All I can do is hold onto my anchor and pray for strength.

Praying. I am so thankful thousands are praying for us. Sometimes I feel like I don't even know how to pray any more. Since Teddy and Nina were born, I have prayed a very specific prayer every night for them. I would always thank God for the gifts that they are and then ask that He send a battalion of angels to surround them and protect them from anyone and anything that would hurt them emotionally, psychologically, physically, that He would guard them from illness and help me to be the best mom possible. I have literally prayed this since the moment I found out that I was pregnant with Teddy.

I am grieved beyond all grief that God did not grant me my prayers. I have asked for so little in my life. I have endured misery upon misery myself, never letting it destroy but continuously picking up my cross and stepping forward, with a smile no less because that is what a believer does. Cognitively, I understand that God did not cause this, nor that this is something we brought upon ourselves. But emotionally, I feel so abandoned!!!!!! Until recently, God was the only being with full disclosure of my pain and suffering and yet all that I have already endured is not enough??????? Now I must lose my precious daughter!!!!!!! How much pain and suffering is enough?????? The worst part of all is that now Teddy must carry this pain and suffering. I am willing to carry all the pain and suffering that is dished out at me but to see my precious son be wounded like this is unbearable!!!!

I am so heartbroken!!! I know that we don't deserve our miracle more than any other family. We are all equal in God's eyes. But this is fucking bullshit!!!!!! Nina's illness and suffering if cruelty beyond cruelty. I write and try to document how I feel and what we experience and although I am able to capture an essence of our struggle, it remains that, an essence. Even those who spend time with us, have lived with us during this journey, aren't privy to the magnitude of the pain and sorrow that pounds through our veins with each breath we take. There are no words to describe that pain and sorrow. Only people who have gone through this kind of hell can truly understand. Hell it is!!!!!!!!!!

And even though I am shaken to my core, I have not lost faith! I am heartbroken and strained with God. This the truth and will probably remain my truth for a very long time!!!! I feel abandoned but I refuse to stop believing. Instead of losing myself to the heartbreak and strain I focus on the blessings I do have. I submit to that. I do not lose faith because I recognize that the mighty strength I have was given to me by God. God created me this way and in spite of me feeling destroyed by God's current plan I understand that I have also been built to stand any storm. God is the only one that can see time, beginning to end. I take comfort in knowing there is a purpose, one that I will not understand until I see Him face to face, but there is a purpose, just like there was a purpose in God giving me the spirit of a lion. People ask how I can keep doing what I do, how I can sob one second and smile the next. There is no rational explanation. I don't understand it other than this is how God made me and He made me this way for THIS purpose. For that I am thankful.....but I still feel abandoned!!!! I am still pissed off!!!! I am still heartbroken!!! God knows that even without me muttering a word. It is written in every drop of my blood. But God is God and He can handle me, in any form I come!!!!!!!!!!!!!

Speaking of blessings, Eileen's company is magnificent. Even when we are engulfed in darkness, together we can always find a way to breathe and laugh. Together we have always encouraged each other through our own struggles and as such have built an incredible bond. One gift from this journey is that I have discovered how truly hilarious Eileen can be. We have always loved laughing together. I LOVE laughter, it is one of life's greatest treasures! But it wasn't until now that I genuinely discovered my friend's irreverent and sarcastic sense of humor! The girl is a hoot!!!

Friday also marked the beginning of Nina's birthday weekend. Originally I had thought this was going to be an easy fun filled weekend. I know it will still be joyous but now it has turned into a sorrowful joy (what an oxymoron!!!) I know it was not coincidence that everyone we most love was planning on spending this weekend with us before Nina took a turn for the worst! The awful irony of it all is that it was part of the plan, just not my plan!!!! So, I spent the morning preparing for the arrivals. We all did some last minute tidying up. Teddy was beyond excited that Niels and his cousins were coming! I was so grateful for the relief I saw in his eyes when he talked about them!!!! At least in the midst of this fucking horrifying turn of events, Teddy would have the company and joy of his best buddies. At least they would have each other to have fun with.

While Eileen and I cleaned, Nina wanted her daddy. Again, I was thankful that he had this time with her both for his sake but also for mine. As Todd and Nina hung out and ate a smorgie of food, Teddy went with Mario to Kmart to buy some nerf guns. In spite of my extreme focus on Nina's illness and needs I have never lost sight of planning for Teddy's care. I knew that he felt a heavy burden and that he would be all torn up, filled with mixed emotions about his sister's birthday party. He needed a little something and nerf battles always help boys (My liberal friends hate me right now! Too bad!!!!). I gave the guys specific instructions. Buy each of the boys a cool nerf gun and don't spend more than $25 on each gun. I don't know why I didn't see this coming. I expected they'd buy some regular nerf guns, you know the small ones, but when they returned from the store I was greeted with massive Tommy guns that require batteries!!!!! Teddy was stoked so that was all that mattered. To make things even funnier, Mario bought himself the daddy of all Nerf guns!!! The thing was a monstrosity and Teddy was totally salivating over it but it cost more than I had allowed. He whispered to me, "I'm gonna save my allowance to get one of those!" I smiled and kissed his warm cheek.

Soon there after, the Marbans arrived. Teddy retreated to his lair to plan his attacks, Mario took care of Cristina, and we sat down with the Marbans to talk about Nina. It had been a week since Linda had last seen her and about a month since Eduardo had last seen her in person. Although the Marbans are world famous physicians and researchers they are first and foremost my friends so I was able to see the look of deep sadness in their eyes. They didn't need to say a word.

Nina had a good day today. She ate and swallowed decently. We just needed to watch her very closely. She slept in almost until the Marbans arrived and was responsive. She smiled and laughed at our silliness and got annoyed and angry if we did something that pissed her off. Most of all, she was eager for Sosie and Adelae to arrive. "When are the cousins coming?" she would ask, barely audible. The Marbans got to see how much she struggled with her speech first hand and I had to remind them that today was a good day for her communication. In fact, today was a good day for Nina's overall functioning in comparison to the rest of the week. At one point when I said that, I saw Linda flinch! I could imagine what she was thinking, This was a good day?? But true to form, Linda said well's a good day! No wonder we are such amazing friends!!!

Not only had the Marbans come to spend the day with us, they brought Las Fuentes!!!! Over the best food in the world, the Marbans asked what I needed from them and I explained that I needed them to help me coordinate with our new nursing team and Dr. Greenfield a medical plan for Nina. This week had been a nightmare because I had no plan. All I had was my daughter going through hellish pain and misery. We did not want Nina to be in misery!!!! As such, I needed to have a concrete plan about which medications we were going to use and how and when we would take Nina to the hospital. There is nothing like planning the end of your child's life over Mexican food!!!!!!!! Actually, it probably couldn't have been better. I love Mexican food. It is comforting!!!! And eating comforting yummy food is incompatible with panic and distress over the most heinous of topics! is grim and sick!!!!!

Eduardo and Linda understood my needs. I called the supervisor of the new nursing team and Dr. Greenfield to make appointments that Eduardo could attend. At the beginning of this nightmare I had asked him to advise me as if Nina were his own precious daughter. Nina and Cristina are the exact same age so this makes it very, very real for Eduardo and Linda. Every step of the way, the Marbans have done exactly that!!!

Right after lunch, the Dawsons arrived!!! Teddy was elated to see his buddy Niels and they ran off. Yvonne just hugged me, trying to pour every ounce of strength into me! After a few hours of playing, they took Teddy and the boys to Zodo's for bowling and food. I was thankful, so thankful, to have someone I could trust to take care of Teddy. Yvonne had loved Teddy from the very moment of his birth. It was fitting she help me now!!!

We met with Susan, the supervising nurse and clarified what their role would. Starting Monday they would come daily for a couple of hours. Then we went and met Dr. Greenfield at the Starbucks in Vons. Todd came along as well. I was glad he did because he needed to participate, for his own sake. With Dr. Greenfield we discussed exactly (as much as these matters can be exactly planned) what the plan of action should be, which medications should be used, when medications should be administered and how we would decide to enter the palliative sedation phase. I made it clear that if Nina had to die from this awful monster we wanted her to stay at home, in the comfort of her home, as long as possible, and that we did not want to transport her to the hospital until she was permanently unconscious. We did not want to give her anything more to fear!!!!! Dr. Greenfield is a gentle and loving man. He has children the same age and he understood clearly what we needed. As such, he and Eduardo agreed that before transporting Nina we would snow her so severely with medication that she would never know what was happening. Todd sat and quietly cried. I reached for his hand and tried to provide him with some comfort. But what comfort is there when you are sitting at a table discussing how to help your precious daughter die peacefully!!!!

I left our meeting feeling secure. I hadn't felt secure all week but now I knew we had a plan. I understood that this plan could and would probably change but its existence helped me feel more secure, grounded. Seeing your child miserable in pain is the worst thing any human can ever go through. If having a plan of action helps then why the hell not!!!

The best piece of information I got from the meeting was that we could use morphine patches to give Nina narcotics. Since swallowing was becoming an issue by the day I wanted to have something on hand instantly. I knew I could learn how to access her port and add medication through an IV but I also wanted something more, I just didn't know what. After Dr. Greenfield mentioned the patches, I signed a huge sigh of relief.

We went to Rite-Aide to see if we could pick up the patches but Dr. Greenfield needed his triplicate so we agreed to get them from him tomorrow. I hugged Dr. Greenfield and thanked him for his support! Every one we have met has been such a blessing!

When we returned home, the company Life Solutions came and brought us a suction machine and oxygen tanks. They showed us how to use them. I listened but didn't think we would need to any time soon. Linda and Eileen cleared a corner to store them. I looked at them carry those things off and shook my head!! How could this be????? How can this be our life!!!!!!

Thankfully, my moments of sadness are short lived. It was dinner time and I had to focus because my sweet girl was hungry, "I'm starving mama!" Mario had taken Cristina to Chuck-E-Cheese, so when he returned the Marbans said goodnight. At that point, Mario asked if I had found his gun. Mysteriously his massive gun had disappeared :) When I had asked Teddy where it was he gave me a shocked (but guilty) look and said he couldn't believe I wouldn't trust him, that I was accusing him of taking Mario's gun!!! Mario and I looked around the condo and found his gun, all set up in the garage. My guilty son and his accomplice Niels had spent the afternoon building an arsenal in the garage. From the looks of things it was obvious they had planned to ambush Mario! We both laughed and Mario asked for a sheet of paper and pen. He then wrote the following note and left it on Teddy's bed:

A minute after Mario had finished his letter Joe and the kids arrived!!!!!! The kids were so happy to see Nina and gave us the biggest hugs!!! I grabbed my keys and Eileen and asked Todd to send us a Taco Bell order for the kids. We grabbed some grub and then picked up Teddy. The look of happiness on Teddy's face when he saw his cousins was priceless!! I reminded myself that above all, this was a birthday weekend!!!!

Holding hands with Sosie

Watching Pink Panther with Addie

Of course it had rained all day!!! All I hoped for was that it wouldn't rain on Sunday!!!!

Sunday, February 20, 2011

Restful Sleep

Nina got some much needed rest last night. The morphine patch plus the atavan really made a huge difference!!! She even requested to keep the oxygen mask on all night, sweet precious girl!!!

Although Nina rested it was almost impossible for Eileen and I, who were laying next to her, to rest! Her breathing is so labored. You can hear the fluid build up, the accumulation of spit. Periodically she would burst into a violent cough, clearing her airway!!! Each of these coughing spells would shoot through Eileen and I like a bolt of lightening. We are remaining calm but it still hard to not be in constantly petrified when your child is fighting to breathe and here is nothing you can do!!!

Twice in the last hour she has woken up and said she was hungry. I explained Vovo an Vava were on their way to make breakfast. She didn't protest but quietly went back to sleep. She knows when Vovo and Vava make breakfast it is good times!!!

As I publish this post, she is still comfortably sleeping.

Day 184

Thursday February 17, 2011

Eileen and I cuddled with Nina all night.

Nina slept. Some tossing and turning.

Teddy woke up in a great mood. Said I was the best cuddler in the world.

On the way to school, asked me if things were bad. I reassured him that they were the same and that I was so proud of how loving he was being to Nina.

He held my hand all the way to his classroom.

Friends came to visit.

It hurts to see the ghostly looks on their faces when they see Nina.

I hate seeing how behind the pain in people's eyes death looms....they look at Nina and see death. I hate that!!!!!!!!

Nina enjoyed her bowl of Lucky Charms. Had dad hold the bowl but insisted on feeding herself.

She can't walk any amount with assistance.

She can barely hold onto to us when we stand her up to clean her up after she goes potty.

We have her bowel movements under control. Doctors worried about constipation because a major side effect of narcotics.

She can still swallow her pudding with the pills.

Swallowing becoming increasingly harder.

Gags on food.

Gags on water and liquid in particular.

Extremely frustrated when we can't understand her.

Can barely speak.

Sometimes only 1 in every 10 words is intelligible. Takes multiple tries for us to understand her. She looks panicked, pissed, scared!!!

Keeps saying she feels like she is falling out of a car :(

Constantly struggling with temperature regulation.

Asked to go swimming again.

Wanted to wear her orange swim suit. Said she liked them all but insisted I pick one :) I told her I loved the blue polk-a-dot one.

Wanted Panda for lunch! Who would have guessed.

Teddy had a wonderful play date with his buddy Will.

His teacher said he is doing extremely well.

Teddy is a rock!

Talked to my friend Susan about bringing her boys to see Nina before she got worse.

I want every one who loves Nina to be able to see her and love on her.

Made Eileen hold Molly. Systematic desensitization of animals! Eileen's husband very happy!

Nina went swimming with dada again. This time not as long because she was cold.

We laughed when we could.

We cried when we needed to.

We tried and tried to make Nina happy!

The Becchios came by with the boys.

The boys were so sweet to Nina but were sad and scared. I tried to use Molly and dressing her up to bring in some levity.

Nina struggled to be nice.

Got happier with chips and the cheesecake cup from Panda Mario brought her when he picked up Molly.

Nina mocked Mario in front of every one. Reminded us all that he is going to be Pearl from Spongebob for her birthday and has to wear a skirt :)

Nina wanted to cuddle with Daddy for bedtime.

Both kids fell asleep easily.

We tried to rest :(

Day 183

Wednesday February 16, 2011

The oxycodone worked a miracle. Nina rested!!! Thank God she rested!!!!

When Nina woke up she requested to go swimming in her new swim suite. She loved her new swim suites and had bought 4 :) A girl can never have too many swim suites. For the past couple of weeks, Nina has been increasingly asking when we could go swimming in our condo pool. Each time I had to explain we would need to wait until summer and time I'd get smacked.

I had breakfast with Dan Brennan and brainstormed ways to deal with our Hospice nurse being out of commission. Poor Laura had broken her arm earlier in the week and required surgery. It seemed like such a long time ago since Dan I sat in his office trying to figure out what was wrong with Nina. We cried and hugged!

When Yvonne arrived on Monday, the first thing she did was call around town until she found an indoor heated pool. The YMCA had generously offered for us to use their pool and we had an appointment for 11:30am which made Nina very happy!!! As we got ready, Nina asked for Teddy to come too. By this time, it was 10:30 am, Yvonne had gone on a donut hole safari and Todd was upstairs. Thankfully, Larisa was able to come save the day again and hang out with Nina while I went and picked up Teddy. At first, Teddy was hesitant to come because he didn't want to leave school and be stuck with extra work :) I explained that wouldn't be the case. When he arrived home, he gave Nina the biggest hug. His enthusiasm was just bounced off the walls!!! It made my heart sing to see Teddy be so strong and supportive....all for Nina's sake!

We had a wonderful time at the YMCA, who ended up giving us free passes. At first, Nina cried because the water was cold (not as warm as she expected) but eventually she settled down on the ramp with Todd and the two of them just sat there, in the glare of the sun, for almost an hour. Nina just seemed so comfortable, so peaceful, floating in the water, leaning up against her daddy. Teddy swam around and performed tricks. He was seriously disappointed that the YMCA has a no one under 15 rule for use of the jacuzzi. The one thing Teddy had looked forward to most was using the spa. Teddy is like his mama in that request....we both prefer spas :)

Earlier in the morning I had called our families and told them they needed to come asap, that I strongly believed Nina was slipping and that they needed to see her now. I also called Eileen and told her she needed to come earlier than planned. Originally, Eileen was planning on coming at the very end of the month. I knew Eileen would be devastated if she wasn't here before Nina fell into sedation. Within an hour of speaking to her, I got a text from Eileen telling me she was on her way to the airport. I sighed a huge breath of relief!

After a wonderful time of floating and swimming in the pool, it was lunch time and Nina requested.....Panda Express!!!!! Larisa and I went to pick up food while Todd, Yvonne and the kids relaxed at home. I could not take another bite of Panda so I snuck over to Baja Fresh.

With our tummies full, the rest of the afternoon was calm. Nina and Todd napped, while I hung out with Teddy in his room watching iCarly episodes. Around 4pm I told Teddy to put on his shoes and get ready to go to the park or beach. Teddy has been doing amazing but I don't want to take anything for granted. The last thing I want is for him to hole himself up in his room playing video games and watching tv. Of course when I suggested we go out, Teddy got super annoyed and threw a medium fussy. I ignored and pressed forward. Within seconds of arriving at Goleta Beach, he was running around with Molly having an absolute blast!!!! Also within seconds of arriving at Goleta Beach, I realized I locked the keys in the car. Thankfully I had my phone so I called Yvonne and had her bring the AAA card. Yvonne joined us at the beach. It was refreshing, almost cleansing to walk along the beach, to smell the ocean water, feel the wind race past us, smile at Molly's hair fly all over the place, and relish the happiness on Teddy's face! Each time Teddy ran past us, all I could do was smile! He is such an astounding person!!!! He is only 8 years old but he has walked through this journey with more grace and love than most adults. Teddy is destined for greatness and he already proving me right!!!!!!!

Yvonne had been under the impression that Todd had called AAA. When they didn't show up for a while I called to check on the status of the tow truck and discovered that the call hadn't been made after all!!! That meant we had to wait extra longer but Teddy didn't mind. He just ran up and down the beach like a manic puppy! It was so good for him to get that energy out!! Eventually the tow truck guy showed up and opened the car. We went to the store and picked up flank steak, Nina's request. Back home, Teddy took a warm shower while I grilled the steak. Nina was deliriously happy to eat the steak. Her swallowing was ok and because of the medications her emotional misery was under least better. Bottom line, we were relieved she wasn't miserable. Misery for our honey-girl is unacceptable!!!!

Once everyone was settled after dinner, Yvonne and I met with Sharon, Crystal and Larisa. I don't want to go into details about our meeting other than it was the kind of discussion I had hoped and prayed we would never actually have to put into place!!!!!

At 11pm Eileen arrived. The brilliant Bostonian didn't bring a jacket so when I took longer to pick her up she froze! Even though we live in temperate Santa Barbara it is still winter. I hugged my ding dong friend. I was soooooo thankful to have her by my side!!!